Aligilles syndrome/transplant

[tatie04]

Hi. I'm new to this. My daughter is nearly 11 and was diagnosed at 2 weeks old. We had our yearly scan and ultrasound yesterday and we're told she will probably need a transplant in the next year or so. Any advice on explaining to her would be welcome. Thanks

[Hidden]

Hi my Daughter was diagnosed with bilary atresia a few weeks ago now. No transplant and totally different I know, but we have found a page on face book called liver mums very helpful. X

[ConsMum]

Hi, are you in the UK? My son has Alagille Syndrome and we are under King's. They have psychologists at the hospital that are very good at helping children/young people come to terms with what's happening. I'm sure Leeds and BCH have them too. Play specialists and family support workers can be helpful as well.

[tatie04 in reply to ConsMum]

Yes. We are under Leeds Care team. Thanks for that,we are at very early stages at the moment so hopefully they'll put is in touch with those people x

[ConsMum in reply to ConsMum]

If you undergo a transplant assessment you should meet the whole team, people I've mentioned plus clinical nurse specialists, transplant co-ordinators etc. I've also met the adolescent worker from Leeds who is really nice. You don't have to wait for assessment though, you can ask to be put in touch with the the psychologist etc now. I assume as you're here that you're in touch with CLDF, and as babyTiff mentioned, if you're on facebook, Liver Mums is a UK group where you can speak to parents going through the same thing. Wishing you lots of luck x